Sunday, October 16, 2011

New Online Groups for Teens and Parents!

For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents. I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups. I finally did it this morning, after recent events made it feel urgent.

I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area. In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others. But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

A couple of weeks ago, when Jamie was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer. I was sitting in a medical facility with Jamie, waiting (hours) for his IV, and I was ready to burst into tears. I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad. Then I realized I could reach out to our local group of moms. I sent an e-mail, explaining how bad things had been and how I felt like I was losing it. Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?" It was one of the moms I'd just e-mailed! She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us. She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get Jamie some Gatorade. In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support. I was totally blown away. I want other parents to have this same kind of support.

As for teens, Jamie went to his Homecoming Dance last night at school. He lasted only 2 hours and came home in tears. He wrote this poem this morning and posted it on his regular Facebook page:

"How many times can I break till I shatter."
-O.A.R

Trying to scream out the frustration swirling through my
mind but I lack the energy.

My last high School Homecoming and

I'm trapped in my own body.

Oh how I wish to be free,

... the things I'd do

the person I'd be

If
only I were free.

And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO! I set up two new Facebook groups this morning, one for teens and one for parents. Turns out it's pretty easy. If you're not familiar with how these work, here's a quick overview:You do have to join Facebook to participate, but most teens and many parents are already on there anyway. Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members. Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group. You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate. This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let Craig join at 12). And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)

ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)

ME/CFS - Pacing with a Heart Monitor, a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate.

And not on Facebook...there's a group website for young adults with ME/CFS and related illnesses ("young" is defined as less than 40 years old) that is very active: HealKick (thanks for the tip, David!)

So, please use the links above to join our new groups or some of the other groups on Facebook. It's a great way to interact with other people who totally "get it." Of course, please continue to read and comment on blogs, too!

I thanked you in an email, but I just wanted to thank you again for setting all of this up!!!I'm excited about it.

I'm so, so, so sorry that things have been so very hard lately. But, I am VERY happy that you have such wonderful support around you!

Goodness, my heart aches for Jamie. I can understand what he felt when he wrote that. For me poetry has become a powerful form of expression and way for me to work through the good and the bad of life.I hope that writing is therapeutic for him too.

Hi Sue - thank you so much for creating these Facebook groups. Your timing is perfect as we have been totally stressed out here with our daughter and her illness. I know what you have been going through because we are just as devastated here. You know you have to do something different but just don't know what because it seems like everything makes her worse. So, anyway, it will be so nice to really be able to connect with others that get it! I do use other fb groups but mostly for POTS and fibromyalgia. Thank you for everything!!!!! Kim Draghi

Thanks for the tip! Since I'm not a "young person", even by that definition, I didn't know about healkick.com. I did think there was another sort of online spot for young people with CFS but didn't remember what it was.

Which has a title of "Content not found" and this printed on the page:

This content is currently unavailableThe page you requested cannot be displayed right now. It may be temporarily unavailable, the link you clicked on may have expired, or you may not have permission to view this page.

Thanks for letting me know the links aren't working for you. I have no idea why, but I have contacted the administrators of both groups for some help. I will post new links here (and correct the original post) as soon as I hear back from them. Sorry about the extra trouble - I was trying to keep things simple!

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.